When medically fragile patients age out of long-term pediatric facilities, the consequences can be heartbreaking
By LISA EISENHAUER
When the directors of Elizabeth Seton Children's Center noticed what seemed like a grim trend of former patients dying shortly after aging out of the center, they checked the numbers.
Cardinal Timothy Dolan greets Jesus, a young patient, while making a Lenten visit to the Elizabeth Seton Children's Center in Yonkers, N.Y., on March 28. Cardinal Dolan, the archbishop of New York, took advantage of press coverage of his outing to voice support for the center's plan to build a long-term care facility for young adults with medically complex conditions. Chris Marksbury/Courtesy of Elizabeth Seton Children's Center
Sure enough, they found that 30 percent of the patients who had aged out of the center since 2012 under state regulations had died within 14 months of being transferred to an adult care/geriatric facility or a facility managed through the New York State Office for People with Developmental Disabilities. The age restrictions limit the stand-alone pediatric long-term care facility in Yonkers, N.Y., to patients 21 and younger.
The center cares for what its Chief Executive Patricia Tursi calls the "most fragile of fragile" young patients. All of them have chronic conditions and are profoundly disabled. Few of these children can talk, walk unassisted or eat by mouth. Of the 169 patients there in early August, about 65 were reliant on ventilators.
In years past, patients like those cared for at Elizabeth Seton Children's seldom survived into adulthood, Tursi says, but advances in technology and specialized care are changing that.
But once these patients age out of centers like hers, the specialized care that has kept them alive often ends, Tursi says. Few adult care centers have the equipment and staffing needed to support these patients.
"It just sort of happened overnight," Tursi says of the aging out crisis. "We feel like we woke up and now all of a sudden we have this great joy, which is all these kids transitioning into adulthood, but nowhere for them to go in a safe way."
A worthy cause
So Tursi and other directors of Elizabeth Seton Children's have come up with a proposal to build a center with beds for 48 young adults similar to the one they are running now. They even have a proposed site: 4.5 acres right next door that they hope to buy.
Tursi isn't fazed by the $45 million project price tag. For one thing, her board at Elizabeth Seton Children's is highly supportive of the proposal.
Rachel Amar poses with her son Max at the "Under the Sea"-themed prom held in June for residents at the Elizabeth Seton Children's Center. Chris Marksbury/Courtesy of Elizabeth Seton Children's Center
"Everybody's on board," confirms Rachel Amar, a board member and the mother of a longtime resident at the pediatric facility.
Tursi says Cardinal Timothy Dolan, archbishop of the Archdiocese of New York, encouraged her to apply for a grant from the Mother Cabrini Health Foundation, a Roman Catholic charity that gives away up to $150 million a year. Its mission, its website says, "is to improve the health and well-being of vulnerable New Yorkers, bolster the health outcomes of diverse communities, eliminate barriers to care and bridge gaps in health services."
The proposed residential health care facility for medically fragile young adults checks all those boxes. Tursi's grant application asks for $20 million over two years. She hopes to hear back by the end of the year.
As soon as funding is in place, Elizabeth Seton Children's will apply to the New York State Department of Health for a certificate of need. Tursi expects to secure that authorization and to get the support of New York's Medicaid regulators.
"They've invested in our care, in our programs, in the children, in the families," she says. "They don't want any undue harm coming to them."
First in its class
Jill Montag, public information officer for New York's Department of Health, would say only: "We do not publicly comment on specific proposals that are before the department for review. The department is exploring options regarding developing long-term care models for young adults."
Tursi says the Elizabeth Seton Children's long-term care facility for young adults would be the first of its kind in the nation. It would provide care to patients up to age 35.
Tursi and Carolyn Ryan, vice president of quality at Elizabeth Seton Children's, say they'll base the proposed facility's care models on practices that have proven highly successful at the pediatric facility.
"You see these kids just thriving," Tursi says of patients at Elizabeth Seton Children's. "The medical community looks at it and says there's no medical reason why this child is still with us because of how debilitating and complex these different genetic disorders and conditions these children have are, and yet they're doing really well."
The pediatric long-term care facility has been in operation for 31 years. It has 750 on staff, including five full-time pediatricians. It has nurse practitioners on-site around the clock. Its registered nurse to child ratio is 1 to 4. Its respiratory therapist to child ratio is 1 to 8. The average length of stay for its patients is 4.5 years. Many of its residents come straight from neonatal intensive care units.
"We're like a little PICU (pediatric intensive care unit), to some degree," Ryan says.
Some children stay for a year of intensive rehabilitation services following inpatient treatment at an acute care hospital, and progress enough to be safely discharged to the home. At the other end of the spectrum are children who, because of the severity of their medical conditions, live at the center for their entire childhoods.
So, in addition to the tiny months-old patients at Elizabeth Seton Children's, there are many adolescents, teens and young adults. Amar's 17-year-old son Max is among them. She says she's worried since he was 15 about where he will go once he ages out of the center. He's lived at Elizabeth Seton Children's since 2006. He was the first patient admitted to its pediatric long-term ventilator program.
Amar says the care he gets is superb. "It's so special," she says. "I go every day and I see it."
Tender loving care
Beyond the specialized medical care needed by Max, who was born with a brain stem incapable of directing normal breathing and swallowing, Max's caregivers provide personal care that keeps the teenager content and comfortable.
As part of Max's daily bath ritual, aides blow-dry his long hair, which Amar donates every couple of years to Locks of Love. That charity makes wigs for children with medical hair loss. When Max's locks are long, the aides braid them. "Every day I come in and he has a different type of braid," Amar says. "I don't know how to do hair at all. I'm so impressed."
Amar doesn't see a home other than the young-adult center that Elizabeth Seton Children's is proposing as an option for Max once he hits 22. "It has to happen," she says.
Ryan and Tursi feel a similar sense of faith and urgency. Once young adults are discharged, the center has no say in their care. And while the center has tracked the statistics on their mortality, it hasn't tracked the specific causes of the former patients' deaths. The severity of some patients' disabilities may put them at higher risk for lethal complications. But Tursi and Ryan suspect, regardless of what any death certificate might say, that "broken-heart syndrome" is often a factor. For many patients, being forced out of the center means being forced out of the only home they have known for years.
More than 50 of the children's center's current patients will age out of the pediatric facility within the next five years. "Our absolute goal is we'd like to be able to open a new facility in three to four years," Tursi says.
'Mayor of Elizabeth Seton' cheerleads for residential facility for young adults
Stephanie Gabaud is on a mission. At 21, she is within months of technically "aging out" of Elizabeth Seton Children's Center in Yonkers, N.Y. That will officially happen on her next birthday, Dec. 14.
For now, Gabaud has a reprieve from state rules that say the center can only care for patients 21 and younger. Officials with Medicaid, which funds
Gabaud's care, have agreed to let her stay on at the center where she has spent most of her life. The length of the reprieve is indefinite.
But Gabaud is determined that she'll leave Elizabeth Seton Children's on only one condition, and that's if it's to move into the long-term care facility for medically fragile young adults proposed for a tract of land adjacent to the pediatric long-term care center. Gabaud has become the unofficial spokeswoman for the proposed facility. She talks the project up to anyone who asks about it, including the mayor of Yonkers, news reporters and Cardinal Timothy Dolan, leader of the Archdiocese of New York.
Cardinal Dolan is a supporter of Elizabeth Seton Children's. He made a stop there this spring during his Lenten visits and he touted its plan for the residential facility for medically fragile young adults in front of the TV cameras that followed him. He's also a fan of the proposal's spokeswoman. They have met several times. He calls her "the mayor of Elizabeth Seton."
He's not the only eminent church leader Gabaud has made an impression on. She was in audiences during the visits to New York of both Pope Benedict XVI and Pope Francis. Both times, she managed to get a personal blessing.
Actress Angela Bassett shared photos of her friend Stephanie Gabaud on her Twitter feed last year. Gabaud dressed as a police officer for Halloween because Bassett plays one as the star of the FOX's "9-1-1."
Patricia Tursi, chief executive of Elizabeth Seton Children's, says getting those blessings was no small feat for a tiny woman like Gabaud, whose head barely rises above the top of the hot pink wheelchair she uses.
Tursi vividly remembers when Gabaud met Pope Francis in 2015 at St. Patrick's Cathedral in New York City.
Gabaud had been sick in the days just before the pope's visit with an infection so severe that surgeons had replaced the rods that supported her back, which was severely compromised at birth by spina bifida. Tursi says no one was sure Gabaud would be able to sit in her wheelchair and attend the service, but she insisted on going.
As the pope greeted some VIPs across the aisle from Gabaud, Tursi suggested the young woman move her wheelchair forward a bit for a better view. The chair brushed the pant legs of some of the pope's guards.
"And they just startled and looked and realized that somebody's there and Pope Francis felt it and he turned and in the corner of his eye he saw her and felt her … He turned around and she flew her arms up and he came right over to her," Tursi recalls.
Gabaud says her encounters with Popes Benedict and Francis have been among the highlights of her life, along with her friendship with the actress Angela Bassett.
"She's someone that I admire and look up to," Gabaud says of her glamorous pal. The two connected years ago with the help of the Make-A-Wish Foundation and have stayed in touch since. In February, Bassett invited Gabaud to an American Heart Association event where the actress was accepting an award.
Tursi says Gabaud is a singularly effective champion for the proposed long-term care facility for medically fragile young adults. She radiates joy and people relate to her.
"They're like, 'Yeah, I get this and I want to be able to help,'" Tursi says.
Gabaud says of her fellow residents at Elizabeth Seton Children's: "I know what these kids go through every day, and we want these kids to have a better quality of life."
— LISA EISENHAUER
Copyright © 2017 by the Catholic Health Association
of the United States
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